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Disulfiram - Part 14

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Posted 10/10/2020 8:14 PM (GMT -5)
Been off DSF for two weeks now. At my last LLMD conference call when I decided to stop DSF, my LLMD suggested that since I was now on Medicare maybe we should get a full Lyme/Co-infection lab set from IGneX since Medicare covers the cost without a co-pay or deductable.

I hadn't had any positive Lyme or Bart tests ever since my tick bite in June 2005 and starting treatment in March 2010. All Western Blot labs always showed only IgM 23 positive, so we treated based on symptoms.

Anyway here's my IGeneX results after over ten years on abx and 9 months on DSF:

IgM 23 +, 41+
IgG 41 IND and 93 IND

IgM B Burg US (genus) Positive
B Burg European (genus) Positive
B Burg Species Positive

All Co's were negative.

I had heard that most patients sending blood to IGeneX would stop taking abx for a month to get a better chance of getting a Positive result.

I had added Ceftin to DSF in July and still got solid IgM positive results.

CDC Positive Lyme Western Blot was the last thing I expected to see when I opened the lab report today.

Now I don't know what to try next, since DSF was going to be my last hope.

Thoughts???

Post Edited (tickbite666) : 10/10/2020 8:33:12 PM (GMT-6)

Posted 10/10/2020 9:35 PM (GMT -5)
“ CDC Positive Lyme Western Blot was the last thing I expected to see when I opened the lab report today.“

You have symptoms still right?

IgM means early infection or active (but older) infection.
Posted 10/11/2020 2:42 AM (GMT -5)
I thought the test will stay positive for years after successful treatment. I would go off of symptoms my friend.
Posted 10/11/2020 8:51 AM (GMT -5)
Yes I still have lingering neuro symptoms, mostly foot neuropathy, upper body tremors/vibrations, some short term memory issues and head pressure (although improved greatly), and spontaneous bruising and blood vessel ruptures.

Most of these sx I feel are Bart related, and I am prepared to accept that this is as good as it gets. I just hope that I don't back slide if/when I stop abx again. I have been considering trying the Ceftin, Clarithro, Nitroxoline combo, but can't located Nitro on my Rx formulary. I've looked it up under Furazolidone as well with no luck finding it's coverage cost.
Posted 10/11/2020 10:09 AM (GMT -5)
I would not put too much faith in antibody tests IgM or IgG other then telling yourself you have been exposed.
Posted 10/14/2020 1:44 PM (GMT -5)
Following quote on IgM v. IgG Western Blot taken from Dr C of Missouri post in Lymenet forum many years ago:

"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.

Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.

But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.

Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.

Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa.

Since this is a chronic persistent infection, this does not make a lot of sense to me. A newly formed Borrelia burgdorferi should have the same antigen parts as the previous bacteria that produced it."

My LLMD office called Monday to schedule a conf call for tomorrow am to discuss the IGeneX results and next steps.
Posted 10/14/2020 3:59 PM (GMT -5)
Don't forget to factor in for antigenic variation in testing IgM positive when it's disseminated late stage, and, on paper at least, should be IgG positive.
Posted 10/14/2020 4:23 PM (GMT -5)
"Since this is a chronic persistent infection, this does not make a lot of sense to me. A newly formed Borrelia burgdorferi should have the same antigen parts as the previous bacteria that produced it."

I think this is because borrelia often shed their outer surface proteins, and produce new and slightly different ones.. part of what makes them "stealth"

Post Edited (potsnpans) : 10/14/2020 6:25:25 PM (GMT-6)

Posted 10/14/2020 8:25 PM (GMT -5)
PnP, thanks, that explains why I always get IgM 23 positive on every WB I've ever taken in past 15 years. The text you quoted was part of what I copied from Dr C's post, and not my thoughts.

This was my first time with two positive IgM bands, and I am surprised that Lyme bands were so easily detected in my blood while on DSF and Ceftin. I think that DSF has busted up a lot of biofilm leaving Lyme nowhere to hide. I'll update more tomorrow after talking to my LLMD.

Post Edited (tickbite666) : 10/14/2020 7:31:30 PM (GMT-6)

Posted 10/15/2020 8:28 AM (GMT -5)
My LLMD reviewed IGeneX labs with me today and said no concern for the WB pos results since the PCR tests were all negative. I did have Babs Duncani IgG give a marginal 40 result with a reference range of <40 for Negative, and <160 may or may not suggest active infection. Babs is something I'll have for life and hopefully my immune system can keep it in check. Relapsing Fever Borrelia did show both IgM and IgG IND exposure, and rest of co's were all negative.

I will finish Ceftin this week and go abx free and see how it goes. If I do backslide in the next few months I'll be open to going back on a second round of DSF.

At least I now have a full range of IGeneX labs to use as a benchmark against future re-testing now that Medicare covers the cost.
Posted 10/15/2020 8:32 AM (GMT -5)
tickbite,

Why do you say you will have babs for life? Of the 3 b’s, I thought babesia was the easiest to eradicate.
Posted 10/15/2020 9:00 AM (GMT -5)
Babs is a cousin of malaria.... there is no cure and it can return anytime in your life. You just hope to put it into remission and your immune system can control it from there on. Lyme and Bart are said to also be the same.
Posted 10/15/2020 9:11 AM (GMT -5)
It might be a good exercise to differentiate between babs. At least one study suggests babs d can be almost impossible to cure, if I understand correctly. But that's only one study I saw, and who knows if I read it correctly.

Babs m, if caught early, purportedly can be cured quite handily, but if not caught early, it grows increasingly difficult to eradicate.

Regardless, testing is worse than a crap shoot. I've got b microti, and I test only sporadically positive. But it's there, and I've been told by someone who knows babs that it will likely be there for the rest of my life, hopefully more asymptomatically than with its full array of sequelae..

TBD diagnostics are a travesty.

Post Edited (duncan) : 10/15/2020 8:45:19 AM (GMT-6)

Posted 10/15/2020 12:48 PM (GMT -5)
Thanks Duncan,

I treated fully based on sx only for the past 10 plus years. This set of IGeneX labs were my first CDC lyme positive results ever. Other than that I did have a SPECT scan back in 2010 that showed reduced blood flow in brain consistent with Lyme infection.
Posted 10/15/2020 1:25 PM (GMT -5)
SPECT scans seem to be out of favor over the last few years thanks - at least in part - to the IDSA crowd I guess. I tried to get one a couple of times and was refused. Ironically, I think it was back in the latter '90's that Eric Logigian from U of R did a lot of interesting Lyme research using SPECT scans.

I did get multiple MRIs and a gazillion tests courtesy of the NIH in Bethesda. What a debacle of denial there. But even they had issues downplaying all of my positives, even from Mayo. Even from that company that used to market that contrived Bb strain to measure against...Sorry, cannot remember its name. Imugen?

IGeneX is golden, imo, although I've never used them. Never needed to. But I've spoken to them many times over the years, debated with them on some topics, too. They were so helpful in aiding me decipher my multiple labs, even though they weren't their labs. They are top notch in my book.

Post Edited (duncan) : 10/15/2020 12:56:18 PM (GMT-6)

Posted 10/21/2020 2:43 AM (GMT -5)
How is everyone doing?
Posted 10/21/2020 6:43 AM (GMT -5)
I'm up to 250g 2 days per week. I had two really good weeks. I was able to get some work done on the farm. It felt great like the old me had a chance to come back. Then I went to 250 and felt like a truck ran me over. Really bad back and all over body pain. Ears ringing super loud again. Mild anxiety. Twitching. Super tired. Nothing I haven't been through already.

Still taking rifampin, azithromycin and minocycline. Cut my rifampin to 300mg per day and azithromycin to 250mg per day. Stopped all.other abx.

It is normal for symptoms to return while on DSF right?

Those two weeks gave me hope. Real hope. It was the best I've felt since all of this started.

How are you doing rainey?
Posted 10/22/2020 12:22 PM (GMT -5)
Hey WV Mike,

Sorry to hear symptoms have been rough but I do think it's normal while you're on DSF.
When I was on DSF I had good and bad days too, more often bad.
I know what you mean about hope. After I quit DSF I felt healed for 3 weeks, and it gave me real hope.
However, the last week and a half my symptoms have come back, which is really scary.
I think I might have to start DSF again.
Posted 10/22/2020 3:20 PM (GMT -5)
Oh no sorry to hear that. Maybe a little longer on the dsf will help?
Posted 10/23/2020 10:02 AM (GMT -5)
Yes I think so. The good news is that I felt healed for 3 weeks, so I do know it works. I think I just have to stay on it for longer smile
Please keep us updated on your progress!!
Posted 11/9/2020 3:04 PM (GMT -5)
Hi all, how is everyone doing?

I have an update here!
Now 3 months on Disulfiram, reached 300 mg/day. No side effects. All good, liver tests still perfect (do lot of milk thistle and dandellion).
Im happy Im able to do this treatment with "core" Buhner without any problems!

But...no herxes, no reactions within this time. What do you think? Its possible? Actually, I had no herx reactions to any treatments in past. It's a little weird for me. Same small success is here, but I don't know if it's due to some supplements like L-Carnitine and B12.

This is what some of my past results look like, the first link is from this summer, before I start my second DSF journey:
https://www.dropbox.com/s/w0f5wasll3sat35/IMG_20200701_192959101_3.jpg?dl=0
https://www.dropbox.com/s/ityh40gq8bw6mwj/IMG_20170816_113246237.jpg?dl=0
https://www.dropbox.com/s/ztfbjw0niq9mm6b/IMG_2666.JPG?dl=0

What do you think about cross reaction in results?

I hope for some discussion ;-)

Thanks folks!
Martin
Posted 11/12/2020 1:31 PM (GMT -5)
Bump for some discussion, thanks smile
Posted 11/12/2020 4:13 PM (GMT -5)
I see a + on band 39 which is lyme specific

But from what I have read and been told by two LL docs -we can’t rely on antibodies to show active vs old/past infection.
(Unless this test is different)

So yah you have lyme - but how to determine if you have sufficiently treated.
Posted 11/14/2020 1:21 AM (GMT -5)
Hello fellow disulfiram users

I was on 62.5 mg for a few months, probably 5 months total and was taking a dose everyday

Recently I've upped my dosage to 125 mg every other day/every third day and the benefits are starting to really show. I wasn’t noticing enough improvements on the low dose of 62.5 mg and if anyone is not seeing the benefit at 62 maybe consider going up because that seems to be a better help to me, my doctor believes in higher dosage but not every single day for disulfiram (every other day or every 3) to allow the body to recover and it seems to be helping more than everyday dosing

Looking to up it to 250 mg soon
Posted 11/25/2020 10:53 AM (GMT -5)
How's everyone doing? I'm up to 500mg three days a week. I've also quit my azithromycin. Usually when I try to quit azithromycin all hell breaks loose but so far not to bad. Bad joint/spine pain, a little anxiety, big increase in twitching and some heart palpitations but nothing to bad. Improved some so pushing through. Really want to be done with azithromycin. I've been taking it for over three years.

Dsf messes with emotions/head a bit but nothing terrible. I may pop off a bit more easily so I try to be aware. Mainly I'm just really tired and feel like an invisible giant hand is pushing down on me. Like moving through water or something. Some side pain.

Really excited that I was able to quit the azithromycin. That's a win in itself. Down to just minocycline, rifampin, nystatin and dsf. Would love to be able to get away from all the meds completely. Another week of three days and then I'll go to four days a week.
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